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The Global Retinoblastoma Study Group (GRSG), founded by Professor Didi Fabian, brings together experts from over 150 countries and more than 450 centres worldwide.<\/p>\n
The GRSG has published several major pieces of research, revealing that:<\/p>\n
\u2022 Children in low-income countries with the disease are 16 times more likely to die<\/strong> from it compared to those in high-income countries within 3 years of diagnosis<\/p>\n The study looked at survival data from an estimated 50% of all new cases worldwide in 2017, finding that over two-fifths of children die within three years of diagnosis in low-income countries, compared with fewer than one in 100 in high-income countries<\/p>\n \u2022 50% of children<\/strong> in low-income countries present to doctors with a tumour that has spread outside of the front of the eye, compared to fewer than 2% in high-income countries<\/p>\n \u2022 There is no association<\/strong> between theorised causes of Rb including smoking, breastfeeding, maternal age and birth order<\/p>\n \u2022 Nearly a quarter of children diagnosed with rare eye cancer in Africa die within one year<\/strong><\/p>\n The group has just completed enrolment for the Global Retinoblastoma 2024 Presentation Study, with 5,570 treatment-na\u00efve children diagnosed at specialist centres worldwide (representing 149 countries). According to incidence calculations, this cohort captures approximately 74% of the global annual burden of retinoblastoma, making it potentially the largest and most comprehensive dataset ever assembled for a single paediatric cancer (or potentially any medical condition). <\/span><\/p>\n This work aligns closely with the WHO Global Initiative for Childhood Cancer (GICC) and reinforces retinoblastoma as the only index cancer with robust global baseline data, thanks to the extraordinary collaboration of the Global Retinoblastoma Study Group and Rb-NET. Multiple analyses and sub-analyses are now underway, and centres will continue to follow children and report three-year outcomes in 2027.<\/span><\/p>\n <\/p>\n Arazi M, Fabian ID. Global Retinoblastoma Service Availability Datasets, 2017 and 2024, on behalf of the Global Retinoblastoma Study Group. LSHTM Data Compass.<\/em> December 2025. https:\/\/doi.org\/10.5281\/zenodo.17591528<\/a><\/p>\n Yanagihara RT, Takayesu JSK, Crotty EE et al.Clinical Stage of Retinoblastoma Based on Presenting Signs of 4578 Patients from 121 Countries.\u00a0Ophthalmology. <\/em>September 2025.\u00a0https:\/\/doi.org\/10.1016\/j.ophtha.2025.04.030<\/a><\/p>\n Kaliki S, Vempuluru VS, Ahmad A et al. Impact of Race on the Outcomes of Retinoblastoma Treated With Primary Enucleation: A Global Study of 1426 Patients.\u00a0Clinical and Experimental Ophthalmology.\u00a0<\/em>December 2024.\u00a0https:\/\/doi.org\/10.1111\/ceo.14488<\/a><\/p>\n Kaliki S, Vempuluru VS, Bakal, KR et al. High-Risk Histopathological Features of Retinoblastoma Following Primary Enucleation: A Global Study of 1,426 Patients from 5 Continents.\u00a0Retina<\/em>. December 2024.\u00a0https:\/\/dx.doi.org\/10.1097\/iae.0000000000004250<\/a><\/p>\n Kaliki S, Vempuluru VS, Fabian ID, et al. Retinoblastoma with and without Extraocular Tumor Extension: A Global Comparative Study of 3435 Patients. Ophthalmology Science<\/em>. October 2024. https:\/\/doi.org\/10.1016\/j.xops.2024.100637<\/a><\/p>\n Nishath T, Stacey AW, Steinberg D, et al. Retinoblastoma survival and enucleation outcomes in 41 countries from the African continent. British Journal of Ophthalmology<\/em>. August 2024. https:\/\/doi.org\/10.1136\/bjo-2023-324746<\/a><\/p>\n Fabian ID, Abdallah E, Abdullahi SU, Abdulqader RA, Abdulrahaman AA, Abouelnaga S, et al. The Global Retinoblastoma Outcome Study: a prospective, cluster-based analysis of 4064 patients from 149 countries. The Lancet Global Health<\/em>. August 2022. https:\/\/doi.org\/10.1016\/S2214-109X(22)00250-9<\/a><\/p>\nPublications<\/strong><\/h3>\n